Mindful of being Mindful

I genuinely thought that my next blog was going to be a continuation of my previous post 'Fifty Shades of White', which I ended on the promise, or threat depending on your opinion, of 'to be continued.....' Well, I actually did go and see a Specialist and she did confirm that I had Vitiligo and I did get emotional but right now I am not in the mood. I felt so low last weekend, I developed a new found empathy for snails and slugs and any other of God's creatures that rise less than an inch above the ground. The Consultant was kind, supportive and empathetic; I couldn't ask for more, unless you're talking about a cure. The truth unfortunately is that although she offered me lots of advice and alternatives, finding a solution to Vitiligo is like shooting in the dark. You may or may not hit your target - its all down to luck or something that rhymes with it.

Anyway, I decided that I cannot afford the luxury of wallowing. Besides I have very little patience for people who wallow and I'll be damned if I am going to let this disease turn me into a 'wallower.'  Another thing I can't abide by is using the word 'fight' when referring to a disease. The disease is in my body and if I fight the disease, I fight my body, which means I am fighting myself. Now, now, don't go calling me names like 'hippie' and 'moong eater,' even if the latter is true -  I am rather fond of moong. And if you don't know what moong means, just Google it for goodness sake. In my time (yes I am of a certain age) we had to look it up in the Oxford dictionary (or indeed any other dictionary). 

Well, I don't 'fight' diseases and I eat moong, so I hardly expect anyone to raise their eyebrows in surprise when I say that I am a believer in Mindfulness. If you have read any of my previous posts,you will get the impression that I am not a bandwagon jumper. In fact very selfishly, when I discover something that works for me, I secretly hope that it doesn't attract too many bandwagon jumpers. I am going to go slightly off topic now because I have had a terribly exciting light bulb moment. I am imagining a lovely jumper with the picture of a wagon and 'Mindfulness' written above it!! I am also imagining getting rich with this idea and now I am back to earth with a thud!

When I was 15 years old, I discovered yoga. I did my yoga exercises almost everyday and became impressively flexible. If I had any illusion that it also made me svelte, that was quickly put to rest when I met a family friend. "I heard you do yoga?" she enquired. "Yes", I said with reasonable pride. "Oh," she said looking me over, "you really don't look like you do." That's when I discovered meditation. I practised yoga for nearly 15 years and meditation on and off till today. I had a bit of a break from meditation when I had children. If anyone dares to ask me why, I would dare to say that you either don't have children, or you have children and a nanny, or you have children and a live in mother-in-law, in which case meditation would be your lifeline!

About ten years ago, at a particularly stressful time in my life, I noticed that whatever was upsetting me kept going on in my brain as if it was on a loop. (I was practising awareness without realising it.) Anyway, I decided to stop all thought for a couple of minutes just to give my brain a rest. I did this from time to time and then realised that it was like very intensive meditation. So I started meditating again and didn't think too much about the stilling of my mind until I watched an Oprah Winfrey show. She was interviewing Eckhart Tolle who was talking about stillness and being in the present moment, also known as awareness and mindfulness. I was excited (and disappointed that I hadn't discovered mindfulness!). I bought Eckhart Tolle's book 'A New Earth', loved it and completely converted to the thought of being present and living life in constant awareness. Some years of practising mindfulness before the bandwagoners arrived. 'Mindfulness' became a buzz word. Courses started being run and certificates started being dished out. I thought and still think it's great. What I don't think is all that great is when you take an original idea and don't have the guts to stick with it. I remember reading somewhere where a course was being run, that the course involved no spirituality at all. I understand that it was meant as a reassurance but to me, whether it is meditation or mindfulness, getting in touch with your spiritual side is hugely important. Discovering that spark of God inside you (yes I know 'hippie', 'moong eater', 'sandal wearer' keep them coming!) is extremely important to attaining peace and awareness.

Now I would like to say that after ten years, I have peace pouring out of every pore in my body. I would like to say it but I can't because I don't. Far from it. I have actually developed what I call 'a venting moment', where I vent (to put it politely) either to myself or to someone unfortunate enough who I trust and is in the vicinity and then I bring myself to the present moment. No brain chatter - I ban it (and if you belief that, you'll believe anything!) Ideally, I would like that to happen every time but I haven't reached there yet. If it is something that really upsets me, like my Vitiligo, I resort to what has always worked for me - writing about it and using humour.

To kick off the humour thing, I would say that I laugh in the face of Vitiligo - even if it is not the face I have been used to all my life! The other day I chuckled to myself while applying my 'tanning' lotion (which in itself is a joke considering I am brown skinned). The reason for my mirth? I reminded myself of the middle aged female equivalent to balding men who indulge in 'comb overs!' They don't kid anyone and I suspect neither do I. I am big on empathy these days although I will definitely draw the line when it comes to a certain man who is not kidding anyone with his ridiculous wig, whose name rhymes with Chump and who has aspirations to run the most powerful country in the world!

The other day, a friend asked if the doctor had given me anything to help with the Vitiligo. I said that I was given some potent steroid creams that may or may not work. If they work, fabulous! If not the creams might result in stubble which will hide the white patches! To be honest, I am exaggerating. Most people assure me that they don't even notice my patches, mind you, maybe they are just being polite, I do live in Britain after all.  I can only imagine the comments if I still lived in Goa. "My God, what happened to your face?!" "So sorry no?!" (I am Goan - I'm allowed to make fun. Besides,remember the family friend's comment regarding my yoga practice?).

I guess I am preparing myself for if/when it gets worse. In the meantime, I will carry on writing and using humour. 

Bye, until next time when I have something to rant or rave about. Don't bother wondering whether I was ranting or raving here.  I am the author and even I'm not sure! 

Fifty shades of white - Vitiigo

Should I rave or should I rant? Well, it should come as no surprise that I am going to rant yet again! This time it is against my decision to use this attention seeking title. I know many people pretend not to have read the book ‘Fifty shades of grey’. Well, I am not one of them. I don’t pretend; I have genuinely not read the book because from what I hear, the best thing about the book is its title. All smut, no substance doesn’t actually entice me to read a book – give me a good crime thriller any day (or night which is when I tend to read). Anyway, I digress, as one often does while ranting. Just to be clear, I am not ranting against the book, its author or its readers. I haven’t read the book (or books, I have heard, horror of horrors, that there are sequels) so, despite the impression I am giving, I am fifty shades of neutral.

I guess the reason I am actually using a slightly frivolous title is because it is a terribly non-frivolous and personal topic that I am writing about. A few months back, I noticed a small white patch (the size of a 5 pence coin) on my face, between the left side of my mouth and my jaw. I squinted to get a closer look and then dismissed it. But it kept getting lighter and lighter (hence the title) until I could ignore it no more. It also increased in size very gradually. The corners of my eyes near my nose started to lose pigmentation and a few more white spots decided to take up residence on my face, like unwelcome guests at a party thrown by teenagers when their parents are away. And, just like those parties, it appears to be leaving devastation in its wake.

My GP has referred me to a dermatologist and it remains to be seen what the outcome will be. I suspect it will confirm Vitiligo. I don’t recall any member of my family having Vitiligo and as with everything that doesn’t affect you personally, it is easy to dismiss it or feel mildly sorry when you see someone who suffers from it. I remember when Michael Jackson’s skin colour changed and he said that he had Vitiligo, I harrumphed in disbelief. A likely story I remember thinking at the time. In my defence, I wasn't the only one who thought or said it, or indeed harrumphed. I have done some research and apparently it is an auto immune condition and, with no familial connection or physical cause, it can be caused by stress. Now, I am not a medical person but I have a sneaky suspicion that ‘auto immune condition’ and ‘stress’ are sometimes polite ways of saying that no one has a bloody clue! And if the word ‘idiopathic’ is thrown in as well, your suspicions are confirmed and your goose is well and truly cooked.

So, if I do have it, how do I cope? It’s not like a ‘proper’ disease where people trip over each other to offer ‘thoughts’, ‘prayers’ and hope for a ‘cure’. To start with, there is no apparent cure. And thoughts and prayers appear to be reserved for life threatening diseases (please forgive me for sounding ungrateful and a bit sorry for myself).Never mind that psychologically this disease can be life destroying. It can also be extremely isolating. No one calls to find out how you are; how you are feeing;  whether the disease is contained or spreading.The reason for this, I suspect, is that at some point I am sure most of us dread getting a serious disease, hence we can empathise but I suspect no one actually imagines suffering from Vitiligo. Why would they? It always happens to someone else…..until it happens to you.

I will be seeing a specialist next week but I am not holding my breath. That would be plain stupid, since a whole week of holding my breath would lead to fifty shades of blue! Seriously, I can guess what the outcome of the diagnosis will be, but until then I will keep calm and avoid looking in the mirror because, superficial though it may seem, it saddens me to gradually see the face of a stranger looking back.

To be continued.........

25-10-2016

Well, I did see the dermatologist and as predicted she diagnosed Vitiligo. I got emotional and thank goodness she was very empathetic. She prescribed a very potent steroid ointment which I started using and amazingly, after about two months, my skin started re-pigmenting! Not a 100% but enough to make me cautiously optimistic. I was loathe to stop after two months as advised, so I carried on for a bit longer and watched as more pigment kept filling in,very slowly but going in the right direction. 

 I had an appointment with my dermatologist in August and it could not have gone better. She and I celebrated the fact that my lesions were practically re-pigmented bar for a slightly speckled look. I actually didn’t have any makeup on because I was seeing her and I wasn’t self-conscious for a change. BUT and that’s a big but (hence the caps) I had to stop the very potent steroid cream as it would thin my skin and cause even more problems. Thanks to the internet I have actually been able to see the result of overuse of this steroid. She cautioned me as well, so I moved to tacrolimus and the patches started reappearing. Not like wild fire but spreading nonetheless. And back I go to feeling self-conscious, depressed and all the rest. This is a cruel disease. Not just because it changes your appearance physically but it can sometimes change it in a cruel way like someone with a paint brush and a sick sense of humour. For example, the pigment below my nostrils started fading. Which is bad enough but it decided to leave a thin line of pigment, thereby giving the appearance of two brown streams pouring from my nostrils. Yes a disease with a macabre sense of humour and I had to get it.

I have been reassured that the tacrolimus can actually work but it can take a while, so I am waiting (though not holding my breath just in case I turn blue and heaven knows I don’t need another shade to add to my already ‘interesting’ face!) with a touch of optimism and some cynicism.

It is now March of 2017 and I am up and down on this roller coaster Vitiligo ride. Unfortunately there appear to be more downs that ups, so I have developed a new philosophy, "it is what it is". With acceptance comes peace.

Sugar Love

How do I start my first ever personal blog? Should I rave or should I rant? Well, against my better nature, I've decided to rant. And, believe it or not, I do have a better nature; it makes a rare appearance but it is there buried in layers of cynicism and one day I may actually have something to rave about. But not today. Today I have decided to befriend that much maligned ingredient – sugar and rant against the maligners. The biggest modern day nutrition crusader of all – Jamie Oliver – had an opinion and he brought out his pained expression, the same one he used when informing us about the disgraceful school lunches our children were consuming, to accompany his opinion. I thought that we would see him and his expression on a ‘School dinners revisited’ programme. I was wrong. That ship has sailed apparently, leaving behind a cargo of fat it was meant to take with it.

Now let me make it clear – I do not dislike Jamie Oliver. I don’t love him the way millions of people do but I don’t dislike him either. In fact, I have on a couple of occasions googled his recipes and tried out a couple. I won’t tell you the results because that is probably an indication of me as a cook – I did say that I had a better nature. Just as I neither like nor dislike Mr. Oliver, I neither like nor dislike sugar. It has its place in my food cupboard and if it wasn't for my fondness of wine, I probably would not consume much sugar at all. So you might wonder why I am ranting. Well, it’s to make the bigger point of our apparent inability to listen or understand anything unless it is endorsed by a ‘celebrity’.

I remember before the school meals exposé by Jamie Oliver, I had watched a programme on the BBC showing us exactly what went into chicken nuggets. It was quite horrific. It was disgusting. It was sick making stuff. The reconstituted meat was pretty awful to watch much less come to the realisation that it was what went into our children’s bodies. I remember mentioning it to some friends who tut tutted and simulated outrage, more out of politeness I suspect rather than real shock or anger. No one appeared to notice, no one made a fuss and chicken nuggets and their reconstituted contents, continued to be cheerfully consumed both in schools and at home. Fast forward to a few months, bring on a celebrity chef and everyone starts to froth at the mouth.  How dare our children be forced to eat this awful food! In schools no less! How dare the Government give just 3p (I exaggerate I know) for each child’s meal! How dare! How dare!  Changes were made, Jamie Oliver was declared a saint and saviour of school dinners and everyone moved on.

Press that fast forward button again and everyone’s weight appears to be up. Mine included. And I am aware that it is probably because of my liquid consumption of sugar found in grapes. But I take personal responsibility to do something about it. Not saying when or where! Exercise and moderation will sort most weight issues out. Before I go any further, I have to apologise and say that not everyone’s weight has gone up. A certain chef trimmed down before agilely jumping on his soap box to tell us what we already know – that sugar is bad for us. The Government, made up of politicians, that rare breed of human beings who resist temptation with every fibre of their being, decided that the right and pious thing to do for its people is to tax sugary drinks. Do they really think that the personwho goes to a vending machine for a coke, will actually reach in his or her pocket, stop midway, remember that is a 20p extra and walk away for their own good? If you believe that, you’ll believe anything.

Apparently, the slogan ‘sugar is the new fat’ is now passé; the latest information that we are being given is that bacon is worse that smoking. Any takers? Not JO surely. He must be exhausted from his last ‘fight’ and besides doesn't his friend own a pig farm?

By the way, if like me, you cook most evening meals and are a tiny bit fed up, don’t worry. Recently, guess who popped up on a TV advertisement? Yes, he has joined forces with a company and together, they have pledged to take all the hard work away from cooking meals. The solution? Well, they will send us the ingredients and recipes for our meals! Doesn't that warm the cockles of your heart? Before anyone thinks of getting their heart and its cockles warm, may we all please remind ourselves that there is another option – on line recipes and on line supermarket shopping! I suspect it will be just a tad cheaper as well.

I shall stop now and rant no more…….until the next time!